Scared and confused

[STUDLY37]

I am a new guy to posting but have been reading all your comments of support and hope to each other. It has really helped me through some scary moments and I felt it is about time I joined. My story is I have a bicusped valve that is scheduled for replacement with a St. Jude valve this Jan 3rd. I live in upstate NY. The work is being done at St. Peters hospital by surgeon Ed Bennet. I am so upset and afraid of everthing that I can hardly keep my mind straight to give myself the best options. All you seem to be so strong and helpfull I fell kinda like a coward at times. Maybe someone can help me with the most important information to be thinking about at this time. I have read almost all the posts twice to try and help myself but I just seem to be to afraid of this to keep myself grounded. Thanks for your help and may GOD bless all you wonderfull people. Sorry about the spelling errors.

 

[Nancy]

Hi-

I am from the Albany area, actually Glenville. Dr. Bennett is a fantastic surgeon and you will be in the best hands with him and also with St. Peter's Hospital. They are a great heart surgery facility with an excellent rating.

My husband has had three valve surgeries. His first was done in Boston, and his last two were done at Ellis Hospital and Dr. Harry DePan, who is a colleague of Dr. Bennett's. Dr. DePan is Chief of Cardiothoracic surgery at Ellis, and Dr. Bennett is Chief of Cardiothoracic surgery at St. Peter's.

Even though this is major major surgery, you will be happy to know that most people go home after 5-7 days. And surprisingly, you will be up and walking around slowly after about two days.

The care you will be getting in the hospital is the best the hospital offers. You will have one on one nursing care right after surgery, and exceptionally close monitoring during the next few post surgical days.

The mortality rate for this surgery is very low.

Stick with us here and we will help you through the pre surgery phase and after too.

 

[Karlynn]

Welcome!

If you weren't frightened, we'd be a bit concerned. I can't think of anyone who has had this surgery who wasn't scared. The definition of courage is facing dangers despite your fear, not without fear. We have a lot of courageous people here. By the time I had my surgery I wanted it very badly. I felt aweful and everything else had been tried. Even though I was glad I was having the surgery, I was still very scared.

There are some practical things you'll need to take care of. We have several checklist type posts. Here is one:
http://valvereplacement.com/forums/showthread.php?t=13283&highlight=checklist

Try to have a friend or family member with you while in the hospital as much as possible. It's just good to have someone there to ask questions about what is being done, keep an eye on things and question anything they have a funny feeling about. Hospital staffs are dedicated, but care for a lot of people and sometimes need reminders.

You'll also need someone at home with you for at least the first week. You'll be up walking around, but will tire easily and will want someone around to fix you meals and help out around the house a bit.

Tell us about yourself when you get a chance.

I'm sure your surgery will go very well.

 

[STUDLY37]

Thank you so much

Thank you so much

Thank you so much for the help so fast. I have read posts from you many times helping people and you all are truly angels. I really have to learn to relax and just accept what is about to happen. I respect all of you so much and I now I will get through this with GODS help and ofcourse all of you. I would have never belived the internet could have such a great use. I wished I stayed in that typing class now the tip of my one finger is getting a workout. Thanks again for your caring words.

 

[geebee]

You have found your way to a website I wish I had prior to my surgeries. You are right - the internet is full of great things and VR.com is at the top of the list.

As others have said, the best thing is to make sure you have people to help you and look after you both during your hospital stay and once you are home. There are other comfort things in the list Karlynn sent you a link to but the friends and family are priority.

Let us know how we can help.

 

[Tony]

I had a St Jude valve replacement on 27 June 2002.

The operation and hospital stay of 5 days were uneventful.

At the hospital I felt a bit stiff and sore, kind of like I had flu symptoms.
I was given pain pills (Darvocet). When I protested to the surgeon that I had no pain he said take them anyway.

Upon discharge the Darvocet was prescribed, “on an as needed basis”, which I did not use.

Wishing you good luck with your valve replacement.

 

[gadgetman]

Welcome Aboard.

If you weren't scared you wouldn't have found us. Almost all of us here showed up while we were "internet searching" what we were facing. Almost any question you may have will probably be answered by someone who has "been there done that". Most of us have become "EXPERTS" by "on-the-table" training.

So just peck away at that keyboard and don't worry about the spelling. Trust me, if we don't understand we WILL ask for clarification. ASK AWAY.

Welcome and,

May God Bless,

Danny

 

[aussigal]

Hi...

just wanted to wish you a warm WELCOME too

I have found this place to be the BEST in the whole WWW. for support .

And these guys know so much cos they have all been or are going thru the same stuff....

Best place in the world and I am so grateful I found this joint too...

 

[inlaguna]

Funny, I was just relflecting on my surgery a little over a year ago. I was in another city and scared out of my wits about what was to about to happen.

I didn't know if I could manage the pain.....if I would make it.....if I could get back to living a "normal" life.

The great news is I am celebrating this holiday season knowing that it wasn't quite as bad as I thought it would be.......that the human body and spirit will persevere beyond anything imaginable and that my outlook on my life, family and work has all changed for the better.

Granted, I don't think I was a bad person going in, but I have certainly learned much about the human condition and what it takes to be an even better human being coming out.

You will do great.....you will endure and you will be on to other challenges in life before you know it.

I am completley aware that this is a non-factual dissertation......but I know when I was staring up at the anesthesiologist before I went out.....facts no longer mattered.

Dan

 

[hensylee]

You think YOU are scared? You shoulda seen some of the rest of us. Talk about scared! And yet--- here we are, posting right along, as you will also. No point in telling you not to be scared. We stopped doing tha t years ago. There are people on this board 24/7 to let you use a shoulder and to help you along to the great OR. That is our reason for being - to get you to the mountain and back, armed with as much education as you can possibly learn. We go with you and hold you in our thoughts.

If you are nervous enough to warrant a bit of chemical help, your physician will no doubt allow you to have a rx to relax you.

Someone will put your name in the calendar.

Spelling? Not to worry. If we don't mind Robthatsme's spelling, we won't complain about yours or mine. Okiy?

Welcome to the VR family.

You got a first name?

 

[OldManEmu]

Welcome aboard, I am glad you have decided to move out of the shadows and join the rest of us. It can be rather a challenge to think about surgery in the lead up. You think I can't believe they are going to do this to me and I am going to come out the other side. Well the good news is most of us are survivors and are in much better shape than before surgery, in fact most of us wouldn't be here to correspond with you without surgery! I am like Karlynn I was extremely sick before surgery, so bad that the surgery had to be delayed a week after I entered hospital, while my heart failure was treated. The heart failure was much worse than the surgery and without surgery you will eventually finish up with heart failure. As for the stress in the lead up, you will probably reach the point that many of us do just before surgery were you emotionally hand responsibility over to the medical professionals and you enter this extremely calm state of mind. I can't comment on what to expect in US hospitals as I have never experienced them. The advice already given regarding your return home has most things covered. Enjoy the holiday season and look forward to the New Year with a repaired heart. Keep us posted on your progress.

 

[JCDavis81]

Hi Studly,

I'm so glad that you found this site -- it really helped me and I'm sure it will help you too. I had my second valve replacement surgery on the 29th of November and so far the recovery has been uneventful. I nap more and I'm still sore, but it's really not as bad as you think it's going to be before hand.

I know how scared you must be. It's terrible to think about and the anxiety almost killed me. If you're not careful, worrying about the surgery can consume you and your life. But being scared is normal...you should feel the way you do, I know i was scared out of my wits! It gets better though, get as much information as you can, ask as many questions as you need to (there are NO stupid questions) and use this board to vent when you need to...you'll be amazed how much better you feel when you can post how scared, mad, exhausted, anxious, etc, you are before surgery (and after!)

You will be fine -- they do this all the time. It's still major surgery but you'll get through it. I'm sure, sometime before your surgery, you'll begin to agree with me on that

Hang in there!
Joe

 

[RCB]

Never confuse

Never confuse

....being scared with being a coward. My dear friend, we have all been down the same path you are on and had the same fears- it is only human(excepting a
few here who think HVR is no big deal). What you fear is the unknown and loss of control. Learn as much as you can here, write down questions to ask your doctor, then sit back and leave "the driving to them." You are blessed to have over 50 years of heart surgery research and experience that had made your doctor what he is today. You must believe your going to do well and I'm sure you will!

I am a new guy to posting but have been reading all your comments of support and hope to each other. It has really helped me through some scary moments and I felt it is about time I joined. My story is I have a bicusped valve that is scheduled for replacement with a St. Jude valve this Jan 3rd. I live in upstate NY. The work is being done at St. Peters hospital by surgeon Ed Bennet. I am so upset and afraid of everthing that I can hardly keep my mind straight to give myself the best options. All you seem to be so strong and helpfull I fell kinda like a coward at times. Maybe someone can help me with the most important information to be thinking about at this time. I have read almost all the posts twice to try and help myself but I just seem to be to afraid of this to keep myself grounded. Thanks for your help and may GOD bless all you wonderfull people. Sorry about the spelling errors.

 

[STUDLY37]

Feeling better

Feeling better

Well It truly warms my heart to hear so many care about me. It is like having best friends that you never meet before. My family loves me so much but it is hard for them to relate to this like you all can. My name is David DeMayo and I am from Albany, NY which is in upstate NY. I am 37 years old and am currently unemployed. I have one older brother and two older sisters. My dad is still we me thank god he is strong and really is a source of strenght for me. My mom passed on when I was 6. I have known about the valve for about a year or so now but it decieded to turn on me a few weeks ago. My surgeon told me my heart is a bit enlarged and is working at 60% now but the catherazation showed no other problems. In so many ways I am looking foward to having this done but like so many of you I have to get at a place were I can have some peace with this. I am a very sensitive guy and tend to take things very deep. I have read all your posts so many times when I get a reply I feel so blessed. I am going to try the best I can and look foward to talking with all of you. I have to fiqure out this forum stuff better. I also have the cutiest little dog sam to keep my mind off of things.

 

[KathyH]

Glad you decided to come out of lurking in the shadows. I know I was so happy to find this site and have people who could relate to what you are going through. I know before my surgery I felt like I was dwelling on my problem and hated to keep talking with my family about it. I was afraid to scare them (even though I was scared stiff). You will find the members here very helpful and there is usually a quick reply to any questions. It's good that your surgery is only a couple weeks away. You have a good attitude, a good Dr, and a belief in God and that will get you thru all of this. Even though the surgery is tough, you will be so relieved mentally that it is over. Look over the pre surgery postings, there are some good suggestions on what to bring to the hospital with you. Good luck.
Kathy H

 

[BDMc]

No Fear = No Sense

No Fear = No Sense

David, All of us here share a common experience, and so a common bond. I only found this site about a month ago, but felt very close to some members after just days! It's a lot like a family. Welcome aboard! I found out about my need for OHS during a visit to my primary care physician. It was such a shock, and I was so scared, I didn't call the cardiologist right away as I'd been instructed. My PCP called me at work and demanded to speak with me. He told me to get my butt to the cardiologist! Once I began to face things it got easier. There is a lot to do to get ready, the pre op tests, arranging help and support, and reading the posts here so you know what to expect. I found that focusing on tasks was helpful. Even simple stuff like house cleaning, filling out a Health Care Proxy, and Living Will. We are here for you Brother. Brian

 

[Jkm7]

Hi Dave......It is so good you found this wonderful board. I came here after I had my surgery and had so many questions. Each doctor's appointment I would ask what I thought was every imaginable questions but I had others still. People here have been so generous in sharing their knowledge and experience. I'm new here but am so appreciative for this group.

I expected such surgery would be mind numbing pain and (most) people with any sense of reality are fearful of such pain. I was never in that kind of horrible pain. They kept me very comfortable for the first few days when for most people the pain would be the worst. Once I was moved out of ICU to a step down unit which in my case was on day 3, I found I still needed the pain meds but they worked. And, that, of course, is the point.

Most of us are extremely weak for weeks but day by day, bit by bit, we get better, better, better and you have every reason to think it will be the same for you.

You are young and have the love and support of your family and that is wonderful.

Only those who have been there can really understand. Those who have walked where you are currently walking and will walk after your surgery.


I, for one, know for sure were it not for OHS, I would almost positively not be alive and if I was, I would have very low quality of life.

Now, I lead a full, active life. I walk minimum two miles every day. I take care of my home and my husband and we travel extensively and entertain and enjoy our friends.......I'm alive and living. What more can we ask for!!!

Good Luck....you'll do fine.

 

[rbl1999]

Hi, Dave, I also want to welcome you to this site.. I don't know what I would have done without it prior to and after my surgery.. Your feelings and fear are very normal, my doctor put me on Xanax before my AVR and that really helped, plus I just plain tried to stay busy. You will do fine and feel so much better after. Wishing you all the best... Rose

 

[Georgia]

Welcome, David.

There are some things you can do prior to surgery that'll keep you busy and help take the edge off.

First, determine to enjoy Christmas and New Year's. A few drinks and good food won't hurt your heart, and since you won't feel much like eating right after surgery, be good to yourself.

Secondly, take care of paperwork. You need a will and a living will and power of attorney. Your hospital will have the papers for the living will and power of attorney. This is something you do for yourself and is important. Make arrangements for someone to pay your bills, or write your checks and have them ready for someone to post for you. Make arrangements for someone to do your banking for you, too. The first week home is NOT the time to be fiddling with your checkbook.

Make arrangements for Sam. You won't be able to walk him when you get home (and with the weather like it is in Albany, you probably will have difficulty walking outside for a while. Don't want to slip on that ice, you know.).

If you don't have one, go buy a recliner that is comfortable for you. I know you're out of work, but this is something that will really help your recovery. Perhaps your family could go together to pay for one for Christmas? Be sure the handle works relatively easily, as it is difficult to wrestle with one with a new sternotomy.

Practice with your spirometer if your cardiologist has given you one. Immediately post-operatively is NOT the time to be figuring out how to use it.

Be sure you have a good scale at home. You'll need to weigh yourself every morning to be sure you're not retaining fluids when you get home.

Get a small stool to put in the shower. The hot water can make you light-headed and sitting in the shower helps a lot. And you will want to shower a lot - the chemicals used in the surgery take a long time to get out of your system.

Have layers of warm, comfortable clothes ready for you at home. You'll likely be really cold. I found a silk undershirt really helped, and was smooth and non-irritating on my incision. I also had a small quilt to use while lolling about in my recliner.

Rent or borrow movies or tv shows you like. Concentration is difficult, so these help pass the time when you're not breathing, walking or napping.

Welcome aboard, again.

 

[STUDLY37]

Not so scared and confused anymore

Not so scared and confused anymore

I am sitting here at my computer almost at tears. The caring is amazing from people I do not even know. Thanks again so much for the advice I will be sure to listen to you all. I already have plans set for a new bed and recliner so that will be no problem. I am really going to try to enjoy this christmas with my family. Thanks Georgia for the thoughts about my pal sam he will be well taken care of. He is a corgi and you know how tuff the english are. I wish I had joined this forum sooner as I spent some very bad nights when I was first confronted with this. I hope I can help people in the future when I have recovered. I am sure that love heals the heart also. GOD bless all of you. This whole situation makes me think about a story I heard about footprints in the sand. Thanks again.